EDS v M.E. v POTS

It’s staggering the difference a continent makes. I’m on an American Ehlers-Danlos Syndrome (EDS) forum where no-one has ever heard of Myalgic Encephalomyelitis (M.E.). I’m also on a British EDS forum where many people have either had, or still have, a diagnosis of M.E. alongside their diagnosis of EDS (as I do). And on the Dysautonomia forum DINET, there are people with a primary diagnosis of POTS whose symptoms are indistinguishable from M.E. and in some cases EDS.

And then there is the mast cell connection: mast cell disease is quite routinely diagnosed in people with EDS in America, but never diagnosed in people with EDS in Britain. It’s also talked about a lot on M.E. forums in Britain, but again not diagnosed as so little seems to be known about it here in the UK. So what’s going on? I wish I knew!

There is an overlap of about 90% between the symptoms of EDS, M.E., Dysautonomia (usually POTS), and Mast Cell Disease. The most common overlaps are:

Widespread pain/fibromyalgia for which no reason can be found on scans or X-rays. Also neuropathic (ie nerve) pain.

Periods of tachycardia, skipped heartbeats, pounding/strong heartbeats but usually with normal ECGs.

Shortness of breath, chest pain for which no abnormality can be found.

Anxiety (not mentally induced).

Drug sensitivities or drugs not working properly.

Food allergies/intolerance.

Muscle twitches. Muscle spasms.

Restless Leg Syndrome.

Numbness. Pins & needles.

Changes in body temperature: cold when it’s hot, hot when it’s cold.

Blurred vision, problems with focal adjustment (short to long distance and vice versa), other eye issues.

Sensitivity to noise and/or light.

Feeling ‘wired’.

H-EDS, M.E. and MCAD are diagnosed by exclusion, based on symptoms and medical history (though occasionally MCAD will show abnormalities). The only disease for which a diagnostic test is available is POTS, yet one can have POTS and still also have EDS, MCAD and/or M.E.!

So, what about the differences?

In H-EDS, there is joint hypermobility. This is absent in MCAD, M.E. and POTS.

In EDS there is skin involvement, ie. skin fragility, stretchiness, easy bruising, velvety feel. This is absent in M.E., though easy bruising has been reported in both MCAD and POTS.

In EDS, a hot bath is often beneficial. In M.E., POTS and MCAD a hot bath often makes things worse.

M.E. usually follows an acute immune system attack, eg. catching flu or being vaccinated, although trauma has also been known to be a trigger. Infections can also trigger both POTS and MCAD in some people. EDS is genetic but can be a-symptomatic until, in some people, an infection or trauma triggers a symptom flare.

In M.E. there is post-exertional malaise, not just fatigue. This means you feel like you have a dose of flu following exertion, sometimes with even minimal activity like dressing. The malaise is often delayed, and can appear 24-48 hours after the activity.

In M.E. fatigue is not relieved by rest. In EDS & POTS, fatigue is relieved by rest. In MCAD, fatigue is absent for some people, though in others can be significant.

In M.E. there are on-going immune-activation symptoms, such as sore throat, malaise (ie. feeling poorly), fevers/chills and intermittent tender/swollen lymph glands, which aren’t seen in EDS, POTS or MCAD.

In MCAD, anaphylaxis in varying degrees is widespread, but not found in M.E., POTS or EDS. Or maybe it is seen in both M.E. and POTS, but just not diagnosed as being anaphylaxis because it presents as chronic, and not the more common acute, type of onset?

In MCAD, hives and histamine-related oedema (swelling) is widespread, but not found in M.E., POTS or EDS.

In MCAD, Dermographism is common but not found in M.E. POTS or EDS.

Flushing is common to both MCAD and POTS, but not seen as a symptom of M.E. or EDS.

Both M.E. and MCAD can be life-threatening diseases. H-EDS is not, although other types of EDS (such as Vascular) are. I’m unaware of any deaths being officially attributed to POTS, though they may exist.

When you look at the evidence, the common symptoms between these diseases far outweigh the differences. I have no idea why M.E. isn’t diagnosed in America as routinely as it is in Britain – there are certainly people on both the EDS and DINET forums who have post-exertional malaise and who would fit the International Consensus Criteria for M.E.. I also have no idea why a diagnosis of primary POTS is much more common in America than the UK, where POTS is usually diagnosed as a secondary symptom in conditions such as EDS and M.E.. And why should MCAD be more common in both EDS, POTS and M.E.?

The Elephant Project is a world-wide initiative which is looking at the link between EDS, Dysautonomia, M.E. and Mast Cell Disease. Diana Driscoll is also looking at the symptom overlaps – you can fill in her questionnaire here. One thing is for sure – the similarities between these illnesses can’t be mere coincidence.

I’ve joined the Elephant Project, but still have to get round to sending my information in. It asks how your illnesses affect you, and I’m struggling to get 42 years of illness into a couple of A4 sheets of paper!!!

I was diagnosed with ME many years ago because of the neurological symptoms I suffer from. Some doctors say I have Fibromyalgia, others say there is no need for a separate diagnosis as it is part and prcel of the ME. I have all the symptoms of POTS but not a separate diagnosis as that is assumed to be a normal part of having ME too. Thanks to the psychiatric lobby in the UK virtually all doctors now ignore the original diagnosis of ME made by my neurologist and insist on calling it Chronic Fatigue Syndrome, despite the fact that fatigue is by no means my main symptom and the diagnostic criteria for CFS doesn’t include many of the neurological symptoms I suffer. In fact the standard definitions of CFS bear very little relation to the realities of what I live with. I agree that the whole thing is very confusing.

Thanks for your comments, though so sorry to hear that you also have M.E.. As diseases go, it has to be one of the worst. I agree with you wholeheartedly on the whole ME/CFS thing – don’t get me started! I’m on the management committee of the 25% ME Group (which I’m sure you will have heard of as you’re in the UK), which really is the only charity that represents people with ME as against CFS.

I’m sure my ME was the main reason my H-EDS wasn’t diagnosed sooner, as they have so many similar symptoms. My ME pain and fatigue are very different to my H-EDS pain and fatigue though, so I can tell which I’m suffering with on any given day!

In the UK POTS does tend to be diagnosed as a secondary symptom in ME, but in America it’s much more like that you’ll get a diagnosis of primary POTS (with no ME diagnosis). They really do often have such similar symptoms, especially at the severe end of the spectrum, including fluey feelings, crippling fatigue and neurological symptoms. It really is a muddle! x

Hi. My wife has HEDS and also suffers from a lot of sensitivities / allergies etc and I have been reading a lot recently about may cells and histamine and it seems obvious to me that the collagen issues found in EDS can and do have a knock on effect on the mast cell degranulation. We’re seeing an immunologist later this month and so I’m hoping that we can shed some light on this all as many of my wife’s worst symptoms appear to be hhistamine related more than typical EDS joint problems.

Sorry to hear your wife is having similar issues. Mast cell disease does appear to be more common in people with EDS than the general population. According to Dr Maitland, an excellent doctor based in New York who treats people with both EDS and MCAD, our collagen is over-active and because mast cells live in connective tissue this is making our mast calls over-active too.

I don’t know if you’re based in the USA or the UK. If America you might have more chance of your immunology appointment being helpful, but if you’re in the UK please don’t be surprised if the consultant doesn’t know anything about MCAD and thinks you’re nuts for suggesting it! All the members of my little UK support group have had to go to see Dr Seneviratne in London for their histamine/mast cell issues as none of us got anywhere seeing regular immunologists.

Thanks Jak, we’re UK based, North Staffordshire hospital has been where most of my wife’s appointments have been. Most of the people we have seen so far have been supportive and helpful and reasonably knowledgeable, but mostly ineffective in actually figuring out what’s happening!

Just recently Sal has been experiencing a new sensation which she describes as though she feels like she’s about to collapse, but not in a fainting sorry of way (ie. No tunnel vision) she also gets what she describes as head jumps, which she says is similar to the feeling you get in your stomach when you go over a hump back bridge, except that this is in her brain!!

I’ve certainly had both the collapse feelings and the head jumps, but I’ve always thought they were related to my M.E. which your wife doesn’t have. Being as though she has EDS she might need to be tested for dysautonomia (specifically POTS) as autonomic dysfunction is common in the EDS population. The feelings of collapse are common in POTS and the head jumps could be related to sudden drops or rises in blood pressure due to POTS.

Since a decent amount of people appear to be clicking to the What Is M.E. page from here, I wanted to let you know I was simplifying the url (for easier remembering) to “arainbowatnight.com/whatisME” in case you wanted to change the links. 🙂

I’m also looking into the link between EDS/hypermobility and MS /ME / Fibromyalgia , there seems to bw so many horrible debilitating conditions related to EDS and not enough support, I live in the North West England , hardly any support especially for children , Me and my children have many symptoms , I feel guilty if i mention more than 2or3 when going to the gp , def more research is needed

I can’t agree more about the lack of support in the north Caroline – it still shocks me how little is known about EDS up here. Must be so hard to have children with the condition and not be able to access the services you need. Jak x

You have put together the most incredible resource on this subject that I have come across. I will spare everyone details but I am fairly certain to be a EDS/MCAD sufferer, also dealing with a spontaneous CSF Leak. You are doing an incredible service for many, many people that 99.9% of doctors are unable to provide. Thank you so much.

Here in the states ME actually is diagnosed quite frequently, it’s just that they don’t call it ME. They still call it Chronic Fatigue Syndrome (CFS). I have HEDS with vascular crossover, CFS, Hyper POTS, and fibromyalgia. I was widowed almost 4 years ago and now am on my own. Some days it’s hard to even justify getting out of bed… 😦

Thanks Jak for all the hard work you’ve put into your blog, even though you’re really sick, live alone and looking after terminally ill parents. No, wait, we’re doing the criticism thing. OK.

I’m sorry you feel this post is sadly lacking. It is 4 years old and I didn’t know as much then as I do now that’s for sure. And I don’t have POTS but I do have dysautonomia and have had for 22 years. As I say in my introduction on the menu, this blog is about my own experience and this was my knowledge and experience back in 2013. I am not a POTS expert and don’t confess to be. I’m not an expert on anything and just sharing my thoughts – sorry you’re not happy with that.

Welcome!

Hi. Thanks for visiting my Blog. Posts are listed newest first, but if you’d like to start with my first rambling written in 2013 click here. I’m not a mast cell or EDS expert and have no medical training. I’m just sharing my own personal thoughts and journey. This isn’t a forum, more a diary, but polite, respectful comments & questions are welcome – click the ‘leave a reply’ link under post titles or scroll to the end of each post and use the comments box.

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